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Thread: New old guy on the block

  1. #61
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    Congrats Pete I'm struggling to get below 5mg right now. Fatigue is a real issue right now for me.
    ~ Bob

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  3. #62
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    Thanks, Bob. I've been holding at 5 mg since Thanksgiving as I didn't want to have a flare over the holidays. I'll go to 4 mg on Saturday (when I fill my pill dispensers) and see how that goes for 2 - 3 weeks. If no problems, I'll go to 3, etc. Dr. VF said that I would notice that all was not well about 2 - 3 days after reducing dosage and should immediately go back to the pred dosage I was on before the problem. Interesting tidbit from her - the body (without GPA or other AI disease present) normally makes 5 - 10 mg/day of "prednisone". She is sure that my body is making some now (probably 2 - 5 mg/day) which helps explain why my taper has gone OK so far.

    Don't know what to say about fatigue. I don't have the strength or stamina that I used to pre-GPA. When I flare, one of the indicators is crushing fatigue - hard to do anything beyond go from bed to recliner to potty. Late in the day, I'm tired, especially if I pushed it on my walk. That goes away with a good night's sleep.

    Are you doing anything to try to rebuild your strength - even a little bit? I started very slowly - like just walking for maybe 100 yards or so and gradually increased over several months to the point where I could do a couple miles comfortably. I have a pedometer app on my iPhone, and I walk at a pace of about 100 steps per minute (a bit slower than the 180 that TBDBITL uses ).
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  5. #63
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    I'm pretty lucky as I seem to have ok stamina. The strength is slowly returning. The weird weather changes here aren't making it any easier to taper as I get weather related pain and stiffness now, makes it hard to determine what's what

    I am going to try for 4mg when I restart my pills for next week too.
    ~ Bob

  6. #64
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    Congratulations Chrissie and way to go Pete. Hope the taper goes well. Fatigue is what I live with every day and I am not on any WG meds any more. In remission since June 2010.
    Dale

  7. #65
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    How is your 12 year old girl getting on? So sad when I hear of young children being diagnosed with this illness. Although I think youth is on
    their side and a good chance to knock it into remission for a long period. Col 23

  8. #66
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    Six years ago today, I was admitted to the OSU Wexner Medical Center. Nobody seemed to know what I had, but I was very sick. It's been quite a ride, fortunately with many more ups than downs. Life is close to the old normal, albeit with minor concessions to being 70.

    Thank you to to all of you for your support, advice, and friendship! Here's hoping the researchers discover either the cause or a cure for our disease.
    Last edited by Pete; 01-10-2017 at 01:40 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #67
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    Cheers to you Pete.
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  10. #68
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    Thanks, Dale!! Back at ya!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  11. #69
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    Sounds familiar Pete, keep on keepin on! It's what we do!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  12. #70
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    Thanks, Don!! How's the golf game? Playing winter rules?? (-;
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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